Wednesday, September 29, 2010

What I Know For Sure

The surgery is over.
Here is a before pic of my spine (L3-S1)

and an after:

They took out the lower hardware and fused the top.
Aren't "before" and "after" pics usually of your outsides? sigh. Maybe someday!

I'm relieved that the horrible hospital part is behind me, but there are still a lot of questions. I did not wake up pain free.
Nevertheless, here is some of what I know for sure:
*I am still at peace that it's absolutely the procedure that needed to be done.
*I am happy to be home soaking in the simple pleasures of my little family.
*Toddlers look older when you haven't seen them (in even a little) while.
*I am more in love with my husband than ever.
*I still have nerve pain in my legs. No, I don't know why. Yes, it is deeply discouraging.
*While I planned to wax intellectual during recovery reading books and watching deep movies, instead I give a special shout-out to People Magazine and TV, my closest companions ;)
*A fabulous new nail color adds some fun as I tap tap tap away on the computer.
*Make-up helps me feel pretty even just hanging around the house (didn't realize how many mirrors we have hanging around. yikes. ;)
*I am way stronger and braver than I have ever given myself credit for.
"Never, never, never give up."--Winston Churchill

Tuesday, September 28, 2010

Here's the rest of Lee Woodruff's suggestions on best ways to be there for a loved one in a crisis:
"5. Avoid overmothering
Certain physiological things happen as a result of stress or grief. The normal circuits in the body are altered. The caregiver, as well as the patient, is damaged, in crisis, and sometimes things inside their brains don't work they way they normally would. Do not repeatedly tell the caregiver to eat or sleep. They cannot. There are operating on adrenaline, especially in the early stages. Food is only fuel, and sleep is hard to come by. And don't try too hard to pry the care-giver away from the patients bedside for a bite or a walk around the block. They may not ever want to leave their loved ones side, and that's just fine. But also remember that if they say they don't need help with anything, they DO. Don't be afraid to take charge in non-threatening ways to ease their daily burdens.
While I was camped out during Bob's stay in the ICU, my friend Lauren knew that I liked decaf lattes, sushi, brownies, and the special corn and crab soup from the hotel room service. In the early days of our own crisis, I would return from the hospital, shattered and in shock and find these items waiting for me. She didn't nag me to eat or urge me to care for myself; she just took care of me quietly, because she knew I wasn't thinking about food.
6. Be sensitive to what they need to hear
Don't be afraid to acknowledge the person's pain. It's okay to say "This really stinks, but I'm here every step of the way." The most helpful comments you can make involve letting the patient or friend know they are heard. This is a delicate balance because you don't want to minimize things with trite greeting-card philosophy, but nor do you want to underscore the dire nature of the person's situation. This is where you need to use your sixth sense and assess where that person is, emotionally, at any given moment. It may sway from hour to hour. Take your lead from them about what you think they need to hear. It's always comforting to be told, "Let's talk about you for a moment--I'm here to listen if you feel like unburdening."
7. Think practically about what people really need
Stuffed animals, large objects, and flowers in the hospital are cheery, but they often translate into things that just need to be moved from room to room, or take up space in already cramped quarters. Consider practical gifts instead, like pajamas, a luxury soup, thank you notes, a new toothbrush, or slippers. Also, don’t tell the patient or caregiver to call you if they need anything. That puts the burden of asking for help on them. Instead, suggest something specific you can do to help out: a ride for the kids or a sleepover, a dinner brought to the house (without dishes that need to be returned), grocery shopping, cutting the lawn, or walking the dog. Make decisions on the details as much a possible. This includes whether or not they like chicken or fish. Just do it!
8. Choose your words and actions wisely
Don’t expect the patient or caregiver to immediately return your phone call or email. All of their energy right now is on themselves and their immediate family. With each concerned phone call I got from a friend who told me they just needed to hear my voice, I felt more inadequate. “Call me!” well-meaning friends would plead into my answering machine. All that did was pile one more ounce of guilt and failure into my shoulders and add to my to-do list another thing I knew I wouldn’t be able to accomplish. If you need to reach out in the middle of a crisis just leave a message that starts with “you don’t need to call me back, just wanted you to know I was thinking of you."
Also, don’t approach the patient with tears in your eyes or what I call the “sympathy face” (the hangdog look that says, "you poor thing bless your little heart”) This makes the person feel as though they have to use precious energy to buck YOU up.
9. Be there for the long haul
In the first days and weeks of a crisis, people come out of the woodwork, flooding with offers to help. But the real work begins when all the neighbors have gone back to their own lives, and the patient and family still need occasional support. Think of sending a thoughtful gift then, at a time when the family or patient can focus more fully on the beauty of the item. As the weeks pass it is also a time when the patients feels as though many people have retreated; there is no one gathered in the kitchen anymore, no one answering the phone. Simple gestures thru the long haul will make a big difference after the crush of the crisis and will let them know you are still thinking of them. To be needed in that way is perhaps the greatest honor of being a true friend."

Monday, September 27, 2010

Thoughts on how to "be there"

This advice is terrific. It was written by Lee Woodruff (wife to ABC News journalist Bob Woodruff) after her husband's near death in an Iraqi roadside bombing. As soon as I read it, I wanted to share them here. Lee now speaks to families in crisis, and helps direct their friends to the simple acts that are the most helpful when some one you love's world has been turned upside down.

Of course, the words resonated with me since I have been the one on the recieving end these past few years--excepting and heavily relying on friendship and encouragement to guide me thru overwhelming stress. I only hope someday, I'll be able to return the favor.

I'm going to condense them a bit, but here the list's the general idea:

"1. Don't Hang Back -- Make contact
Most people who haven't experienced a tragedy or serious illness at close range have no concrete idea of how best to approach the person who is suffering. They don't know exactly what to say or what to do. Everyone wants to get it just right, but it's frequently hard to gauge what is appropriate. Sometimes these emotions can be paralyzing. But it is crucial to not hang back: the bravest and most wonderful thing you can do is to be there for someone else, even if this takes you completely out of your comfort zone. It is essential to acknowledge what is happening. Call people or reach out when you learn they are ill or going thru a difficult time. Don't give up on them if they try at first to push you away.
When Bob was injured, I was surprised by some of the people who stepped into the void in amazing ways to help. In many cases, they were not necessarily the people I had expected. For the people in the vortex of the crisis it's important to keep in mind that just because some folks don't raise their hands to help doesn't mean they don't care. An inability to cope with what you're going thru could simply mean that friends are nervous or anxious about how best to approach you and tackle the situation.
2. Help them feel "normal"
When Bob was in his coma, one of the many fabulous gifts of help came from my friend Kitty. We were trying to convert family videos to DVD format to play in Bob's room so he could hear the children's voices, but we were having trouble. Kitty just showed up took the tapes, didn't ask pointed questions or demand information about Bob's condition. She told me about her kids and her husband. She entertained me with stories about her workplace. She just came and helped. Two days later the tapes arrived at the hotel desk all transferred onto DVD's.
My friend Colleen sent me a certificate for a massage, which I ultimately did use (even though I worried about Bob the whole time.) Rebecca arranged flowers near the bed, and organized and prioritized all the mail. She never asked me one prying question. Instead she waited til I was ready.
These simple, calming acts and my friends' way of treating me as "normal" were exactly the tonic I needed. In the midst of the tornado raging around my family, I loved it when people talked to me about their aging parents or the fact that their child needed glasses. My world was so unimaginable. I had lost the language of reciprocity. Sometimes when a person's life has changed so much, they want to hear what normal sounds like; they want you to treat them as if their world is just like it used to be.
3. Recognize the power of the human touch
Don't be afraid to make physical contact. Most illnesses or injuries are not contagious. Touches and hugs are one of the most healing things one person can do for another. Everybody wants to feel like a human being. A loss, illness, or injury gives people a sense of being exiled from the herd, so do whatever you can to make that person comfortable---overlook tubes and machines, get down on their level and look them right in the eyes-- just focus on that loved one or friend as an individual. Simple acts can go a long way toward restoring dignity.
4. Establish a healthy information exchange
This means three things: 1) Not demanding information from a patient or caregiver 2) Sharing information that may help and 3) Knowing what to keep to yourself.

When you're visiting someone going thru a difficult time, don't ask questions that make them recount the whole ordeal, the facts and statistics and the road ahead. They may not want to talk about it at all. Just take their lead when it comes to conversation. Resist the urge to share your own stories about similar illnesses or diseases. Many people think that comparisons are comforting or helpful, but these stories can actually be terrifying or insulting. More general expressions of support such as --"I know how hard this is because I watched my mother struggle with cancer"--may be a better way to let the person know that you understand some of what they are going thru. Ultimately, the best thing you can do is to simply listen to the person you wish to comfort. Be sure to let them know you are here whenever they need to talk, anytime. You don't always have to have a solution or good advice; sometimes people just need to unburden themselves, or simply say things out loud."

by Lee Woodruff from Perfectly Imperfect

#5-9 coming next......